Continuing our series of posts, in collaboration with the European Association for Palliative Care (EAPC) Paediatric Taskforce, about children’s palliative care with examples of initiatives that aim to improve care for children, young people and their families.

Today, we hear from Leah Booth, a member of Together for Short Lives’ Young Avengers Group, a national network for young people with life-limiting conditions, which raises awareness and influences service development based on the expressed needs of young people.

Leah Booth

I was diagnosed with Spinal Muscular Atrophy Type 2 just before my second birthday and so for me being disabled is all I have ever known. There has always been a limitation to what I can and cannot do due to my condition. However, all my life I have been a very independent person. I was raised to have an opinion on everything, to have dreams, aspirations and to live the very best life I could. To people who do not know me, other than being in a wheelchair, I seem just like everybody else. I am a young, intelligent, outgoing 25-year-old. I regularly get comments like “Never mind, you will be better soon,” or “Oh, have you been in an accident”? But the truth is I will not get better or start walking again, I will need 24/7 care and support for the rest of my life.

The fact that I went to university and live independently in my own home has led some people to assume that I cannot need much care or support. But what people fail to see is how complex my needs actually are. I require support for all aspects of daily living such as washing, toileting, cooking and getting out to socialise. I don’t know if anybody else has felt like this but it can be very disheartening to feel like you are fighting for your disability to be taken seriously because you have not let it stop you from achieving anything. If you feel as I do about this, please leave your comments at the end of the post.

I believe there is one reason for this. People get confused between my Independence and my Ability. To me, there is a huge difference between Independence and Ability. I believe Independence comes from within a person – their drive to be heard, achieve their goals and to make decisions for themselves, no matter how big or small. Ability is more about the capacity to do those things. I have always had a say in what I want in my life, but without the support from my carers I would not be able to put my decisions into action.

So yes, I am a happy person who enjoys larger than life activities such as flying planes, learning new languages and travelling around the world. But those things are not easy for me to do. It takes a lot of planning and energy and I can never do them on my own. In fact, I never have one minute by myself but I refuse to let my Independence be stifled because of my lack of Ability. It would be nice if other people could understand that my outlook on life and independence in no way devalues my disability.

Links

Together for Short Lives, the UK charity for children and young people that are expected to have short lives. Please view the website for information, including resources for professionals.